Tuesday, March 2, 2010

Ok, so everyone is sick. Olivia, Victoria, Tomas, and Mike (I am hanging in there but only because I have been living on leftover antibiotics - sshhh...I know that nurse is around here somewhere). So I am taking the two delicately lunged children to the pulmonologist this afternoon. I talked to Mike this morning (in Arkansas) and he said he knew Victoria starting ballet would be a bad thing - he knew this would happen, and that he told me so. I told him to use his mystic powers to go buy a lottery ticket. I know I was supposed to marry him because really, who would get off the phone chuckling after a conversation like that? He can take any situation and put a negative spin on it - if you know what to look for it is really quite funny. Did any one see "Night at the Museum 2"? There is a part in there where Darth Vader and Oscar the Grouch want to join the bad guys. The leader tells Oscar he can't join because he's not really mean, just a little grouchy...The girls and I just looked at Mike and busted out laughing so hard!

On a more serious note, Tomas is pretty runny, crusty, coughing, the works. His O2 sats are still up, but his heartrate is way up too. I can feel some popping in his back, but I am hopeful it is just upper respiratory stuff. He is getting his Synagis shots every month, but I also know there are some other pretty bad viruses (is that the plural of virus?) out there. If it is a nasty one it could delay the surgery. Ugh...

Oh, your poor family. YOu simply can't get sick because you have to take care of everyone. HOpe you are all on the mend soon and that nothing turns serious. Ella just got a Synagis shot yesterday...her first one of the season....dumb insurance!!

Thank you for the beautiful birthday wishes in the wee hours of the morning.Little Miss Zoey is fighting a nasty cold as well.So is mom.The little guys are two weeks now with coughs but seem to be finally kicking it.Home for spring break college girl has something and the eldest said she has a massive headache ... always something here.Zoey has a well visit tomorrow.. I'll be pushing for an antibiotic as it always stays in her sinus'.So we are trying to make the cranky birthday girl happy... I am dreading starting her in school for this reason.Bound to catch more.We are opting for only 3 days to begin.Seems long enough for me to be away from her anyhow.

Sending prayers and our persona; mystic powers so that the house will heal... especially the little fragile one.

All about Tomas

When I was around 5 months pregnant an ultrasound revealed a birth defect (duodenal atresia - a blockage between the intestines and stomach) in Tomas which also meant he had a high chance of being a Down Syndrome baby. About a month before he was born I had an amnio that showed he did indeed have DS. He was born on January 16, 2009 and had his first surgery when he was 32 hours old. After that, test result after test result rolled in. In the first month my family learned he had three holes in his heart, his liver was not working, and he had Transient Myeloproliferative disorder (a type of leukemia which resolves in the first few months of life). The second month revealed laryngomalacia (a collapsing larynx), primary and secondary aspiration, and severe reflux. He was switched to tube feedings and had his second surgery to correct the reflux that was causing him to suffocate. The TMD resolved when he was 4 months old, his liver started working when he was 5 months old, and the holes in his heart have closed without intervention. After that we found out his left lung is partially collapsed, he has a stomach hernia and a liver hernia and multiple bowel hernias, and was recently diagnosed with neutropenia. He had another 2 surgeries. He is on J-tube feedings, requires oxygen support, needs to be on a pulse oximeter monitor, and has 10 specialists who follow him. He is exactly what I never knew I wanted. He has taken our family and carried all of us to a place where every smile matters, where the days breathe with possibilities, and joy reigns supreme.

"The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. The
real choice is between love and unlove, between courage and cowardice, between trust and fear. And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not. "